Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
I used to think I was able to research and find answers to questions and make sense of them pretty quickly, Used to. Today and the last several days have been pretty much the opposite and if someone could point me in the right direction I would greatly appreciate it.
I went back to the ENT to follow up from the facial CT, and for him to scope my nose without numbing spray (ouch). The CT ended up being pretty interesting, I have a severely deviated septum - the way he described it to me, it is supposed to be straight mine literally looks like an elongated S. Then, where everyone is supposed to have "wafer" sized bones along the inside of the nose, mine are like the size of an "air bubble in a potato chip" (the drs comparison not mine). When he scoped my nose, the left side was ok. However, he could not scope the right side completely because of the very narrow space between the bones. In fact, he made note that no tubing should be placed in my right nostril as it would not fit (basically).
Ok, long story there sorry, but as most of my head pain is on the right side, and especially behind my right eye, could this be one of many possible causes? I mean, when I breathe through my nose (which I normally do), if I pay attention, I notice the left side pulls in air but nothing really from the right side. Here's the kicker, any suggestions of where I could look to find any information to back this up and take to my doctor?
Thanks a million!
Kristena
I went back to the ENT to follow up from the facial CT, and for him to scope my nose without numbing spray (ouch). The CT ended up being pretty interesting, I have a severely deviated septum - the way he described it to me, it is supposed to be straight mine literally looks like an elongated S. Then, where everyone is supposed to have "wafer" sized bones along the inside of the nose, mine are like the size of an "air bubble in a potato chip" (the drs comparison not mine). When he scoped my nose, the left side was ok. However, he could not scope the right side completely because of the very narrow space between the bones. In fact, he made note that no tubing should be placed in my right nostril as it would not fit (basically).
Ok, long story there sorry, but as most of my head pain is on the right side, and especially behind my right eye, could this be one of many possible causes? I mean, when I breathe through my nose (which I normally do), if I pay attention, I notice the left side pulls in air but nothing really from the right side. Here's the kicker, any suggestions of where I could look to find any information to back this up and take to my doctor?
Thanks a million!
Kristena
with your description of your nose, I'd be shocked if you didn't have sleep apnea. not just because you have a nasal obstruction, but because of the septal deviation. it is a sign that your anatomy is very compressed, it developed this way and narrowed your airway behind your palate and tongue. I think you definitely need to have some nasal surgery to fix the septum and open your airway. you might need turbinates reduced to open things up. however with the potato chip bubble bones I don't know whether this is a contraindication to any of that. I would go back to the ENT and ask about surgical correction of your nasal airway problem, and ask him to order a sleep study. what did he recommend out of that visit? if you are having a CSF leak, I wonder if this is a contraindication to CPAP/BiPAP. that's a good question to ask.
it does sound like your anatomy is distorted, and is probably different on the right than on the left. that might have something to do with feeling the pressure more on the right. but I doubt it is anything that could be fixed, or that would improve with fixing your septum. I have proptosis of my eyes that I believe is from the ICP. my right eye was more prominent than my left. my orbits are asymmetrical, and I think this is why this happened. I've always had more symptoms on the right side of my head/jaw/neck. but I don't think there is anything to be done.
I think your goals should be 1) relieving ICP 2) reversing CSF leak 3) relieving nasal obstruction 4) detecting and treating OSA, because that will make #1 and 2 worse. treating it requires #3.
The potato chip bones I was talking about are the turbinates - I confess to having dopie brain in a horrible way and couldn't remember it until I read your response.
As for what came out of the appointment? He's just waiting for my next tap, almost eagerly. What started all this is that after each tap I get a leaky nose for about a week and then once the normal IIH symptoms come back (head pain, etc) it dries up. He isn't ordering an lp, and honestly I'm not exactly in a hurry to say lets go!
Other than that, I was just trying to see if there were dots there I needed to connect in order to reduce this mess. Right now, I'm willing to try most things and since the bones are obviously different I thought it was a possible place to start?
I just emailed with an ENT friend of mine who said that yes, PAP is contraindicated in CSF leak. that's kind of an important fact to know. it can be started 3-6 months after repair.
but it's just another reason why PAP is just not very compatible with IIH at all.